DH's cancer progression - DH has died [title edited at request of OP]

[Chasingsquirrels]

DH was diagnosed with cancer of the oesophagus with liver secondaries last sping.
He was HER2 positive and had initial chemo then continuing herceptin.
It was very rocky post initial diagnosis - his throat closed up completely and he was hospitalised following a failed attempt to fit a feeding tube, was fed through a PICC line for a week and then they managed to fit a stent.
He coped well with the chemo and the results were quite positive with the liver nets reducing quite significantly and being held by the herceptin.
In the autumn he has a scan following a period of sickness and the main tumour had grown. He had a second stent fitted and then had radiotherapy.
He seemed to be recovering in January but then had a further period of sickness and another scan 10 days ago showed the liver mets have grown and tumour nodules in his lungs.
The consultant said 3-6 months at this stage, with the possibility of second line chemo which if it works could add a few months to that.
DH's general health has gone downhill rapidly the last few weeks. He is very tired, but unable to sleep for more than an hour at a time, has severe pain episodes and underlying general pain, plus tinnitus from the chemo. He has lost a lot of weight.

I've made the decision to take a leave of absence from work, and have been spending the last few days handing things over.
I feel so conflicted about it, he is my direct line manager and to a large extent I've been doing part of his job as well to enable him to keep working which he wanted to do. I'm utterly exhausted and just can't do it anymore.
He has also accepted that he has to stop now.
I don't want to just give up, but I feel I have to spend thus time with him.

I have no idea what my future holds.

Head not so bad.
We've watched a bit of TV and he's just gone up to bed.
I should go with him, but I'm just having a cry.

Oh Chasing.

I'm so sorry.

It's so unfair.

Have you got plenty of support?

I think so. My mum is fantastic. And I've got a couple of close friends who are great. And mostly I'm okay in a coping and not really okay sort of way.
I fell apart a bit after the initial diagnosis and hospital admittance last year, but since then have just been getting on with it.
I've just realised typing this that I'm pre-menstral which is heightening emotions.
I'll go to bed.
Thanks Somerville x.

so sorry Chasingsquirrels

it is so unfair

Yes go to bed. everything always feels so much harder to face when tired and pre-menstrual.
I'm glad your mum and friends are being so supportive. That will make a difference for you in the long run.

Sleep well

Thanks both.
I went to bed, DH wasn't asleep, he tossed and turned for a bit (needs to sleep more upright because of the throat stent and finds it hard to get comfy) then went downstairs - he says he finds the sofa more comfy but partly so I can sleep I think.
He says he didn't sleep till 6am, but might have dozed. Just woke briefly them back to sleep. Not sure what pain relief he needed in the night yet.

Life is just shit sometimes.
My 1st H decided he didn't want to be with me when our kids were small. I was on my own with them for a few years then got together with DH and had had nearly 5 utterly fantastic years and had just decided to get married when he was diagnosed last year. And it isn't long enough is it. I want more.

It really isn't long at all and is so very very shit.
I hope today brings him less pain and you can find some time for you to just be and feel whatever you need to. Don't feel like you have to be the strong one or the rock or whatever. Let those around you help you too. Nothing you feel is wrong be it anger, joy, sadness, boredom.

And keep writing.

It's never long enough. I wanted more too. I spent a lot of time screaming and shouting about it when I got a few minutes to myself out of the earshot of my family.

I'm so sorry.

I'm glad you're in love and being loved, even though it isn't for long enough.

I'm glad too, and we couldn't love each other more. Being with him is like coming home.

And no, it would never have been long enough. He is 14 years older than me, so it was always likely that he'd die before me, but neither of us expected it to be this soon. Because you don't, do you.
I'm glad I don't spend much of the month being pre-menstrual!

Oh Chasing. So many similarities here for me with your relationships. Wanker ex left me when our two were 4 and 7. Met lovely and too good to be true DH a few years later and we will be married 10 years this year. He is also 14 years older than me. It's a huge fear for me about him dying but to be fair I'm the one with a previous cancer diagnosis and risks of an earlier death so we maybe even out...
Much love to you both. My sister has been married 20 years now and doesn't have even a teeny bit of the love you (and I) have in our lives daily... ❤

Chasing - I just wanted to send you lots of love, strength and hugs. I went through this with my DH nearly four years ago, he had lung cancer. You are definitely doing the right thing taking time off to spend with him. This time is so very precious and he will need you. Please remember to look after yourself too, eat if you can and rest when you can.

My heart goes out to you and your DH and my thoughts are with you.

xx

Thank you both.
DH had bloods done on Thursday, he is borderline anaemic which doesn't help and they are monitoring it. There was another issue and they are going to do a short IV infusion on Monday which might help with the tiredness.
Sleeping has gone back to awful after a few days of a bit better at the end if last week.
Hospice nurse said she'd phone today to see how he is and maybe suggest increasing the mild anti-d / sedative they prescribed as it can go up after 10 days. Doesn't seem to be doing a lot of good with his sleep though.
Will ask her about other stuff as she was going to talk to the team about complementary therapies and also TENS for his back pain but no one has come back to us yet.
(My period has started so I'm over the PMT and back on a more even keel. I didn't even know I really suffered from PMT until exH left and I had monthly pits of despair moments in the months afterwards, and I'd forgotten about it until DH's current situation.)

Looks like it's hypercalcemia - he has elevated calcium levels and all the other symptoms. Hopefully the drip tomorrow will help a bit, but from what I've read it won't be long.

Hospice nurse rang yesterday and we've increased the anti-d. She is coming Thursday & bringing a TENS and will refer his mum to their chaplain for a visit.

I'm in a bit of a mess.

Oh Chasing, I'm so sorry.

Glad that his team seem to be on top of things. Does he have a Macmillan nurse as well?

Not Macmillian just the hospice.

It just feels like if he could have had the IV yesterday it would be better, but it's the weekend so things stop.
I'm going to call in the morning and see if he can have it earlier in the day.

Everything seems a bit mixed up, he had the diagnosis and initial hospitalisation and 1st chemo on NHS then subsequent chemo & consultant apps (same as NHS consultant) & scans etc at a private hospital as it's covered by his work health insurance.

Following the most recent scan & progression the consultant app was the NHS clinic and we also saw the NHS palliative care team nurse then and he had bloods done.
Another app the same booked for this Wed.

But follow-up bloods last week at the private hospital, and the drip will be there.

Plus the hospice nurse who did the initial visit last week.

So it's all a bit disjointed.

That's where a Macmillan nurse would normally be of help, joining up all the dots between different clinicians so that you don't have to.

And with EOL care there usually isn't a problem (not at my local hospice at least) about things being done when they're needed, even if it is the weekend. That's where getting the drip privately might slightly be against him, since private hospitals don't have 24/7 coverage in the same way.

Sorry I don't know what to suggest because it depends if you have any emotional capital and time to spare and how much pain - or in need to time sensitive meds - your DH is feeling. But it sounds like a good idea of yours to start making phone calls requesting that the drip is first thing. And also request a Macmillan nurse or someone else who can make sure that he gets things as he needs them, at next appointments.

Trying to make time for looking after yourself in the midst of all that is almost impossible, I know. But there's no point you getting ill from the stress and lack of sleep, it can be avoided, so when people offer to help out, believe them that they want to and give them jobs to do.

You are right about the private care, it's great for scheduled stuff.

When he had the last scan the consultant said he'd refer to Macmillian, but then it came through as the hospice (which isn't Macmillian) so I'm not really sure how that works here.
I'll ring the hospice and ask about Macmillian.

When the hospice nurse rang yesterday I asked about getting it done quicker (not necessarily at the hospice just for ideas) but she didn't suggest it could be done there. I could ring the private hospital - they are open 24/7 just not the oncology department.

I'm not even sure why this round of bloods was private, although it's logistically much easier for us. But he wouldn't be having it at the weekend as an NHS outpatient either.

I think the pain is manageable, and while the drip should help for a while I don't think it is time sensitive other than relieving the symptoms quicker.

I just ache with sadness. I want him to hold me and kiss me and love me. And I can't let myself think that because then I can't stop crying.

Thanks for posting @Somerville, I imagine it isn't easy for you.

Chasing, I just wanted to say I'm thinking of you, I wish there was something I could do or say to ease your pain, I remember it so vividly. Try and rest when you can and just make the most of the precious time you have left. Sending love, strength and hugs. xx

Sorry to hear this. Macmillan helped with info on financial stuff when my uncle had cancer. My aunt told me. I have no words as my mom became terminally ill after I lost my dad and there isn't anything that can be said to make things better. (Hugs)

Oh god, chasing. I hope there are still times ahead where he is able to hold you and kiss you and make you feel loved. And that even when he can't, that the sense you have of each other's love is strong. What is important becomes very clear toward the end, I think.
Sorry, I'm not expressing myself very well.

Yeah we had a cuddle earlier, but it's not the same, but it's what it is now.
I know how much he loves me, and visa versa.

Glad you had a cuddle. It's very clear with how you write about him, how much you love him.

💐

I called the hospital but they can't get him in until 2pm, so we are sticking with that.
The nurse I spoke to said to speak to GP about Macmillian so I'll call them shortly.
He just asked me if "they" thought this was the beginning of the end if they are talking about Macmillian, so I had to say that what I've read about hypercalcemia suggests so. He's gone back to sleep.

Oh bless him.

(And actually, having a Macmillan nurse wouldn't necessarily mean someone is close to the end. They might not even be terminal.)

I'm glad he's getting some sleep, and I hope you can rest while he does - some of the time, at least. It's good that you've taken a leave of absence.